Just go back to sleep!

 This was one of my favorite books when my boys were very little. Somewhere there may even be a dog eared and chewed up copy in a box.

Both boys would take turns fighting bed time. As a young mom I thought it was funny.

Now? Hubby is tired and he wants to go to bed to nap a lot. However, now it seems if he awakens in the middle of the night to use the commode, he can't or doesn't want to go back to sleep. I am no longer that young mom who could power through fatigue. In fact I want to yell at him those famous words by Mercer Mayer. "Just go to Bed!"

Of course I don't. Some nights I can convince him to lay back down and I'll turn out the lights once more. Some nights/early morning I can't convince him to lay back down. 

He gets dressed. Slowly. There is a lot of rest between each part of getting dressed. He doesn't want my help, so I watch.

More nights with a 3AM or earlier rise has happened this week. There have been more signs of what the Hospice Team calls Progression. The leg and foot edema is getting much worse along with bloody urine. Gross. Who would ever think of discussing that subject? We did see it. It was alarming.

The blood thinners were discontinued. Rich was actually quite happy about that. Less pills to take! And so far this helped control the issue. No tests are done to find out why it happened, but there are reasons for it. If he'd had a UTI, he would have gotten antibiotics so he'd be comfortable. But he had no pain.

We progress onward. Oddly enough, even though he is very tired all of the time, Rich is actually happier now than he has been in years. 

His short term memory is quite bad. I have a new way of answering his repeat questions. I don't tell him that I've already told him the answer more than once. I just answer the question as if it was asked the first time.

I don't care now so much that I may get asked the same question 4 or 5 times a day. One day he won't ask. So there is that.

This past week has been a bit tougher. Three nights of 'short' sleep and long days has been my reward for being a Caregiver. Thank goodness the Chaplain and the NP who came to see us did discuss how to make nights better for Rich ...

and how I could get my sleep too.

He knows that his wakeful nights are hard on me now. He'll sit in his wheelchair and fight the sleepiness and his fatigue. He expressed to the Chaplain that he was afraid if he took naps during the day, he'd keep me awake at night. 

What a conundrum. His shortness of breath makes him forgetful and fatigued. But he is afraid of waking up and keeping me awake.

Except when he forgets and nothing matters but getting up for some reason.

~~ Again, I've not written this to complain or ask for folks to feel sorry for me. I want others to know that they are not alone when giving care to a person in Hospice at home. I feel lucky enough to provide the care. 

Some days...

Every journey is one of learning and exploring. Some journeys we don't want to take and don't wish to explore.

Reactions to meds, swollen legs and feet, insomnia, crabbiness, and forgetfulness are all things to be dealt with daily. This is our second bout with profound edema in the legs and all the way up to the thighs. 

Someone hates the meds for edema and complains loudly. 

I wasn't prepared for the aged toddler to become so frustrating. 

You need to elevate your feet.

No. I don't want to. My feet hurt.

I know, nurse Jason said you needed to elevate your feet, I can help you do that on the couch or on your hospital bed.

I don't want to.

You need to eat a banana a day when on this medication as it takes potassium out of your system.

No. I don't want to. Put my compression stockings on.

Sorry I can't, your legs are too swollen for that right now. They won't fit.

Crossed arms and a look. Then.

Can you get me some cookies? 
or
Make me some popcorn...I'm hungry. I want a snack.

You just ate breakfast.

I know, but I want something.

The lights go on in the middle of the night and he sits on the edge of the bed staring at the wall. 

I get up and ask what he needs.

Nothing.

Why are you up and sitting on the bed?

I don't know.

Why don't you lay back down and get those legs up?

I can't.

I roll my eyes so he can't see and sigh. Then I say. 

Please?

I can't.

Why not?

Cuz I can't.

And that is where we leave it a 2am. I start to explain why he needs to have his feet up and why the edema is making it hard for him to breath.

I get a dirty look.

He lays down for a while and then gets up again turning on the light. 

Come and put my socks on I want to get dressed and have coffee and breakfast.

I check my cell phone. 3:30AM, and I sigh. 

This is part of the Caregiving that no one tells you about and that your family doesn't want to know about.  These are experiences that no one can imagine ever happening to them. I didn't. I thought I was a noble person taking this job on. And it IS a job.

He doesn't understand that his lack of oxygen is causing his confusion and his poor judgement.

On the days he is doing well, he can be with it and things feel almost normal. On the bad days, nothing he does makes sense.

Nothing I can do for him pleases him either. 

Yet I know that he is a presence that I will miss when he is gone. I use curse words in my head at 3:30 in the morning. My temperament is not improved with lack of sleep either. 

I have a huge list of to do's to keep up our place, to feed us, to house us, to care for the animals, pay the bills, and make the calls. I get angry...

The Toddler is only interested in himself tonight. 

My frustration takes over. I am tired, I am irritable, I am short tempered.

~~~~~~~~~~~~~~~~~~~~~~~~

Note: The days that are like this IS not an everyday occurrence. These are days when he suffers lack of sleep and a lot of aches and discomfort.

When I first wrote this we had just come of from 48 hours of poor sleep...meaning less that 4 hours of sleep for two nights in a row. Rich's swollen feet and legs started aching badly and the more he tried to get comfortable the less comfortable he was.

He didn't want me to call the nurse hotline, but....

I called Hospice at 5AM and they sent a nurse out. We devised a plan and had to use a Lorazepam to calm his frantic breathing caused by lack of sleep and his achiness due to his edema and frustration.

When you combine lack of sleep, dementia, edema, copd, confusion, medication side effects that cause lack of sleep and confusion ....
you get a mixed bag of problems that are interconnected.

This morning at 6:30 I had to wake hubby up so he could take his morning meds on time. The elevation of his legs while sleeping for 10 hours greatly reduced the swelling. He is calm, he is breathing better, and is in a much better place.

~~~~~~~~~~~~~~~~~~

I'm writing this to anyone who will go through Hospice Care with their loved one. Some days you want to pull out your hair and scream from rooftops. Other days, things go quite normally.

But just like our regular everyday lives. We need to be prepared for all the twists and turns, up and downs, of life. 

Good days and bad days happen. 

The sun still comes up in the mornings.

Thanks for asking

"Things happen for a reason."

"I know what you are going through."

"How are you doing?" Accompanied with a sigh of sorrow and a look of extreme pity.

"You poor thing." 

People who have not been 'in my situation' don't really 'know how it feels until they themselves go through the experience'.

There are many folks who have gone through this experience. I'm going through stages of grieving for my husband while he is still alive. The grieving started years ago. In a blink of an eye, I went from being a partner in a relationship and being free to do my own thing, to a Caregiver who had to pick up all the responsibilities we used to share. 

For 10 years now, I've watched my husband diminish one small bit at a time. In 2015 I started this blog to track our journey through Stage IV throat cancer. His prognosis was pretty dim at that time. The cancer treatment process did quite a bit of damage physically and mentally. He already had mental health issues previously. But the chemo fog and the weeks of radiation [along with a TIA & anaphylactic reaction to chemo] lessened his quality of life.

The doctors were amazed at his recovery though and told him so. The stroke that followed a year later should have done him in. Twice the neurosurgeon had to go into his brain to remove blood clots. The neurosurgeon told me afterwards that he wasn't sure how much damage had been done.

Four days later, he was home. I quit work to care for him and take him to therapy 3 times a week to learn to speak again and work on his thought process that had been messed up. Again, everyone was amazed that he came through this event so well. 

Granted, he could still walk, talk [sometimes backwards -- aphasia] and help a bit with chores. But his interest in most everything stopped. He couldn't comprehend reading or browsing the internet to read about hunting, hound dogs, and other fun things he used to do. TV programs have to be simple stories, nothing complicated. 

His anger issues from his PTSD were diminished greatly. The VA appointed me as his Fiduciary [think POA of finances]. We had an inspection from the Fiduciary folks at the house and we went through our statements and finances. 

I sold our cattle and our breeding mares along with a few mules that were to be 'in training'. Rich was still able to mow the yard and run the skid steer. He even was able to work his chainsaw a bit in order to help clean up messes.

In another 14 months he woke up one morning complaining of his chest hurting along with extreme and sudden pain just before Christmas.

Once more I followed him from one hospital to another. He was once again put in ICU and the attending doctor was once more very grim. He'd had a Pulmonary Emboli. Blood clots in both lungs preventing him from breathing. The doctors at this hospital said his chances of surviving were minimal. However, he did survive. He was in so much pain afterwards. His capacity for breathing while doing anything had been taken away.

At a follow up visit to his Primary Care Physician, he complained about his shortness of breath and the pain. The VA doctor looked at him and told him not to complain, there were others worse off than him.

OH yes, she did!

I immediately requested a transfer to Palliative Care. And there we found the best care ever for someone who has had so many medical 'events'. He could leave Palliative Care at any time. They were concerned for the whole person. Not just the current medical event. His pain was addressed, his mental health was addressed, his comfort was addressed as was mine. He had a Social worker and I received a Social Worker who addressed my needs. She became the go to gal when I needed help, an answer, supplies, assistance in any way.

For the next 7 years our lives were pretty quiet. Rich could still mow with an oxygen tank on the rider. We worked with his severe depression. We--the VA and I. His COPD exacerbations took a bit more from him each time.

He could get around the house safely, he could make his own snacks and cereal. 

Then he had his next event in February. Acute hypoxic respiratory failure. Those terms mean simply: He stopped breathing. Period. 

Rich is still upset that they revived him in the ER. He turned down going on a ventilator and they took him off the BiPap. 

Fast forward now to our 5th month in Hospice. It was the best choice we could have made. There is no way I can get Rich to the multitude of appointments that he would have had to do under regular care. I cannot get him in and out of the car and to the house on my own.

His care team comes here. They keep him at a comfort level and each Hospice worker visits with him too. It isn't like an office visit that feel cold and hurried. 

They don't look at us with pity in their eyes. They have been down this road many times with many patients. But no one talks about it. Why? The thing no one wants to acknowledge is that death is a natural part of living and why not make it easier for those loved ones at the end of their lives.

So here is the funny part. 

Please be amused. I went on Tuesday to meet my friend Pat at the CrossFit gym so I could follow her out to her house.

No one at the gym other than Pat has seen hide nor hair of me since June. At the end of class so many came up to me while I was waiting for Pat to change her shoes.

Those questions bombarded me. The looks of sorry and pity, the questions. I was surrounded by well meaning and fun folks.

So how are you doing? [They dragged out the 'are' with sincerity, anguish, concern, and pity.]

I was awful.

I simply answered, "I'm terrible, thanks for asking."  [credit to Nora McInerny]

Pat covered her mouth from her giggle and looked away as the person in front of me stood shocked and speechless.

But I was being honest.  I was not going to answer, "I'm fine, thank you."

Terrible may have been too shocking. Maybe I should have just shrugged. But I didn't get the pity party of looks anymore.

I did have a lady ask if she could talk to me outside of the gym as her life was turning down my same road with her husband. I'm a good listener and sometimes that is all we need.

Now that I could deal with and I gave her my info. I can help others. When this story reaches its end I will do exactly that. I am looking into volunteering for Hospice.

And that is my answer to "How are you doing."

Sometimes I am terrible. Some days I am fine. Some days I just want the world to go away and not be a responsible adult. 

Hospice is ....

You know, no one really wants to talk about going into Hospice. It almost seems like a dirty word. When I mention my husband is in Hospice I get that look. 

The look in someone's eyes that conveys sadness and curiosity at the same time. People who know me well don't do that, but a casual friend in the store may ask about hubby and when I tell them...I feel the temperature change in the air between us. And the look.

And then they don't know what to say. They do say the social polite thing.

"I'm so sorry." 

Then I freak them out even more and reply. "It's okay. He is happier now than he has been in 10 years."

Their eyes say --You must be smoking weed or something! 

Maybe I am supposed to be sobbing and tearful each time I talk to someone about it. But that would freak them out more. 

The truth is. We as a society do not talk about end of life. It is a tabu subject. There is an end for all of us and I understand that. It does not in any way make it any easier to loose someone.

If I mention this to someone who has experienced going through the end of life with Home Hospice most of the experiences are recalled as bittersweet but not horrible. Home Hospice is different than say Hospital or Nursing Home Hospice. 

It is face to face. One on one.

It can be frustrating. It can be funny. It can have moments of joy and deep sorrow. Worry, anger, sadness, and even wanting to quit are all things that run through the Caregivers mind. 

I've even thought 'Just get on with it already' when I've had a few days of little sleep and too much to do. Then the guilt with a capitol G hits me. Jeeze, did I just think that? How awful am I?

At first I was slightly annoyed by all the visits per week from Hospice. Now I look forward to them as they break up our monotony of daily Caregiving. They understand where the both of us are at mentally and physically. The social worker doesn't just care how Rich is doing. The social worker and the Chaplain are concerned with how WE are doing.

Sometimes it is just friendly visit and we chat about the things that are important to us. Other times the questions are more pertinent but not uncomfortable.

The nurses and workers come to our home. I am not trying to cart a wheelchair and endless supplies of oxygen to doctor visits an hour away. I can have his meds delivered by courier or pick them up at the local pharmacy [which I do].

In fact the pharmacy folks know me be now and greet me like a good friend. No sorrow in their eyes. Lots of smiles when they check me out.

Thursday afternoon hubby felt awful, I could hear his wheezing from another room. He had me call the Hospice Hot Line. I tried his regular nurse, but his phone was off [he was not on duty]. I was transferred to nurse Ashely who decided to come from her current patient an hour away...to evaluate Rich.

She came and evaluated him and spoke with the attending doctor. Med changes were given for a possible bronchial infection. Or the other reason he was feeling so poorly was that it was a progression of his COPD [worsening]. So we adjusted.

The next morning I got a text from Jason, his regular nurse that wanted to know how Rich was doing. He apologized for not having his work phone on. Rich was doing a bit better. Then Jason gave me his personal phone number. I said I never wanted to bother him on his day off.

His text back was pretty amazing. "Val, we've been friends for years, I want you to call me/text me anytime you need me."

Did I say that I've been friends with Jason and his wife for 7 years? As luck would have it, we were assigned a person we knew as a Hospice nurse.

So what is my insight right now?

Rich is living with a life ending disease and as he deteriorates slowly, he is enjoying his life by not rushing from one doctor appointment to another. He is getting people visiting him. Mostly it is the Hospice Staff, but they have become so important to him.

His good buddy Steve calls or visits often. Our granddaughter Ariel has come 3 times this year to see her Grandpa. 

A good gym friend of mine came out yesterday just to visit and drop off some potatoes so I didn't have to run to a store and get them for the supper I'd planned.

We sat on the porch and she told me about her granddaughter and how her own daughter was a 24/7 caregiver and how she has been for 17 years for Spinal Muscular Atrophy. It puts a different perspective on what I am doing. 

Her daughter and granddaughter have to be incredible people. Just saying.

We've been involved with Hospice now since the beginning of March. It was an adjustment for us. But I have to say that the years with Palliative Care [not Hospice but a great medical program] and now time with Hospice have given us a better journey through a life ending disease. I only wish we'd have known about this for my Father in Law and my Mother in Law.

I'm glad we didn't wait too long to get in the program. It has made a world of difference to my husband and I. We feel more connected with what is going on with his health and our own well being. 

[Except for those days -- which are many -- that I feel overwhelmed]

Today. I baked a cake for him. The smile was priceless.

Charlie. The dog knows.

There is more than one reason to have a dog.

Charlie.
He has been acting a little different lately. He chooses not to go outside with me to do chores in the morning. He insists on staying in the house near hubby. He insists on getting up into the hospital bed with him during hubby's naps.

Does he like that situation much better than going out and smelling things? Or does he know that his master is not well.

When Charlie was under a year old, my MIL entered a nursing home. Charlie was allowed to go see her on a regular basis. He'd sit on her bed quietly while she petted him. In the hallway as we'd walk in or out residences would ask to pet him. Since he is only 7 inches tall, I'd lift him up so people could pet him.

Charlie would wag his tail furiously and make little soft noises. Sometimes a resident would give Charlie a ride in their wheelchair. Charlie would sit quietly and proudly as if he was a tiny king.

Charlie's nursing home visits stopped with Covid. I asked about going once more and since my MIL was no longer a resident [she died during Covid], they wanted Charlie to be a licensed Canine Good Citizen.

Poor Charlie. Sit, stay, down, are not in his vocabulary. 

Waggy Tails, Grunting with Pleasure, Wiggling, and being absolutely Cute are his strong points. Being silent and snuggling up to people are another.

Charlie now greets the hospice people with Wiggling and Happy Grunting [his Pekinese mom grunts with pleasure].

He will sit on his chair and take in all the conversation between Hospice and hubby.

When hubby gets his sponge bath, Charlie has to sit on the bed and oversee the process. He lays on the end of the bed and watches. Still as a statue.

Lately he is spending more time watching hubby. His every move is followed. Normally Charlie will take his place on the couch or his chair in the eating area and snooze while keeping a sleepy eye on the activity in the house.

Now he follows the wheelchair everywhere. 

I'd say that he is an exceptional Emotional Support Dog. Does he know what he is doing? Probably not. 

I looked up Emotional Support Dog and was surprised at how easy it is to get an animal certified without any special training.   Hmmmm.

That aside. Charlie knows.
He knows that one of his people needs his warm little body next to his and that somehow it makes that person feel better.

Seven years ago I brought home this funky little puppy and my husband said, "Well, what is he good for?" I handed the pup to my husband and he snuggled right in and made himself at home.

Indeed, what is he good for?

Charlie, you do not need a letter or a certification. We now know your purpose. 

And it is appreciated.

I figured it out...

 It isn't so much as being cranky and tired, although that will contribute to my current feelings.

I keep a paper journal. You know, one of those spiral notebooks with paper in it. The kind you have to actually pick up a pen and write with.

I use it to write down meandering thoughts and mostly the stuff I won't post anywhere on the internet. I can say what I really want to say about certain things without the danger of anyone being offended.

I can approach politics, religion, medical care, and people without any blow back. Well, I suppose if the journal is looked at after I am dead, somebody somewhere may be offended.

I finally realized the Why as to How I was Feeling.

I have run out of empathy and sympathy.

One friend who visited did nothing but talk about his 'situation' and his hardships and his struggles when he came to visit. In the past I offered empathy and listened intently.

My Respite girl who keeps showing up late has offered up her tales of woe without me asking for them. Normally I am the type of person that will listen and figure out if there is a way I can help or perhaps show verbal support. [Her tales of woe include 'excuses' for how and why she ends up being over an hour late]. 

[My thought on inconsistency is this. If I cannot depend on her to be timely, can I entrust her to care for my husband while I am not home? 

Hubby's thought is this. He is a Vietnam Veteran who fought in ground battles in country. IF a person did not have your back and did not act with responsibility, you could die. Pretty simple and direct views in my opinion.]

Here I had two people who came to 'give' me Respite and comfort [Shay's job is this] ... didn't. Instead they focused on their issues and problems and dumped them on me.

So while rambling and writing...this light bulb came on and suddenly I felt much better. I understood where my darkness was coming from and why it was bothering me. 

Here were two people over a period of days expressing all their challenges. They forgot that they were expressing their challenges, issues, problems, to someone who is caring 24/7 for a person who is dying.

They seem to forget that I am having daily emotional mountains to climb. Every day, I watch my soul mate disappear little by little. I am putting everything in my life on hold for his care. I am giving up the things I love to do and things that give me strength and emotional release for him.

My inner self has built a wall that never shows really how I feel on the outer self. 

[It's complicated--> that is how I grew up--> some day I may explain that ... just say, that is how I survived an abusive childhood with mom.]

I'm done feeling empathy and giving support right at this moment for those who need and crave it at every turn. 

Shay did show up on Tuesday and offered up some incredible 'reasons' for being late. She claims they are not excuses and said sorry sorry sorry about 100 times. 

I was chilled to the bones, I just raised one eyebrow as she dug herself deeper into a hole with me. Could she not read my face? Was she so wrapped up in her issues that she could not see how stiff I became? Did she not feel the cold air wafting off me?

She begged to let her come on the 4th where she could make Holiday pay and I reminded her that my Granddaughter would be here and that it would be family time. She asked to come another day [to make up for her loss of pay]. I stated that I'd see her Tuesday the 8th at 9:30 sharp. 

I'm giving her Tuesday because I have a car appointment that I need to get to. After she is done with her shift ...if she shows, I am calling her company and the VA to let them know that she is not living up to expectations. 

This issue changes the dynamics of trust which is a very big issue for hubby and I.

July 1st and Exhausted

 I won't lie.

Caregiving is exhausting. It can be Caregiving as a mom to kids, a mom to a disabled child, a young child caring for a parent, or a spouse caring for a spouse or elderly parent or relative.

I watch the latest PBS program on Caregiving which is a 2 hour program. Our Chaplain suggested I watch it as she felt it was interesting. It tells the stories of a few families along with the history of Caregiving and how hard it has been fought for by advocates over the years.

Francis Perkins served in the cabinet of FDR as Secretary of Labor. She was a powerful voice for not just Caregiving but the Implementation of Labor Laws to protect children, and so much more. If you are interested you can look her up.

So, right now I am exhausted. I my insomnia this past week was well used in visiting the night skies and watching the Fireflies mating dances. It eventually catches up and Sunday night I went to bed at 8pm and did not wake up until 5am.

It isn't just sleep deprivation, it feels like my soul is being dragged through a fog. When I am tired like this, everything is ugly. I am ugly. I am short tempered and have to bite my tongue.

What has not helped at all is that the Respite person has become unpredictable. I had a car appointment. As I am waiting for her with keys in hand to leave.

Text: Sorry hon, is your appointment today? I'm running late.

Me: Yes.

Now if anyone knows me, they know my work ethic is extreme. I always showed up before my shifts, was never late, and never had excuses.

Text: I forgot my medicine I have to take twice a day and had to go back for it.

Me: Hmmm.

I was not amused at being referred to as hon. 

Other reasons for being late. Overslept. Traffic. [on rural roads? plan for it!] Can't find childcare. 

I give her the benefit of doubt but it seems more and more that poor planning is the issue. None of the 'excuses' are valid. Not if she would plan ahead.

I'm going to combine that with the stress from the long weekend stay of my friend. I like him, I enjoy his company. I don't mind his pets. But more than one overnight stay is my new limit. And I am not available to waltz around in the woods and watch out for him.

I am going to set boundaries. I need to. Granted he helped weed my gardens, however I told him not to drop the weeds in the grass I just mowed.

See? When you lose sleep and are burned out, every, little, thing, matters.
Muddy dog prints on the floor. Talking when I need silence. Oatmeal on the table. Spilled coffee. 

None of those things normally bother me. 

However I seem to have become a nit picking freak. I tolerate the messes I continue to clean up [endlessly] from my husband as he loses control over some functions. I remind myself he cannot help it.

Then someone comes and adds to the 'burden'. In reality, they aren't really. But in my mind, it is so.

Jason finally got the idea I didn't want him in my way. He left. Rich will miss his company, but right now I won't. I want silence. 

Rich went to nap, and I decided to put off everything else after scrubbing the house and the rugs...

to dive into a place of divine pleasure. Getting lost in some creative endeavors.

 

After all, what really waited for me outside was storm damage that I needed to attend to.

When Respite shows up today, I use my 4 hours to run errands and then come back and start working on the fencing damage. See, the work doesn't stop just because one is tired or angry, or frustrated...

It still is in your face when you step out the door.

I am looking forward to NOT doing anything Hospice or visit related until Ariel comes to visit on the 3rd.

I may pull out chunks of bark and branches and create a fantasy world [all while tending to my husband's needs].

A final note.
With Caregiving like mine, it can be horrible and beautiful at the same time. It is tiring, it is hard, it is worth it.

We are lucky to have support where other folks don't. So I have to count my blessings as well as my gripes. 

But the mood of the Caregiver goes up and down with stress, anxiety, and fatigue. I am human, so I will have human moods good or bad.

And then this...just minutes ago.

Text: Hey hon, I'm sorry but I overslept, these new meds make me sleepy are you okay with me coming at 10:30 and staying until 2:30?

My response...slammed the phone down on the table.
I should have said no but I didn't. 

Me: I'm not pleased at all. I had to cancel the appointment I had for 10:30 and make it for next week for my car.

I told her to come. I have to get sweet feed, fly spray, wormer, groceries, and medications, along with other errands. 

How else am I going to get these things taken care of? 

I will be reporting this to her bosses and to the VA who contracts her company.

I am done with people who do not have a work ethic.

The conundrum? Rural health aides? Few and far in between and very unreliable. Those folks should be paid good salaries and be strongly vetted.

My last thought. If she can't be trusted to show up on time.
Can she be trusted to be a caregiver for 4 hours with my precious husband?